I suffered with debilitating chronic-almost daily-migraine for 8 years. I am not suggesting that what worked for me could or would work for you. Each and every sufferer is different. Migraine is a neurological disorder with no known cure. I am currently migraine free, though, and this is my story.
Migraine is not just a bad headache. It is an extremely debilitating collection of neurological symptoms.
Source: The Migraine Research Foundation
Blinding pain. Jolting-knee-buckling-stop-everything-and-catch-your-breath pain. Pull the car over. Sit down, on the floor if you have to. Mid-sentence-stop-talking pain. Pain that comes on so fast and so furious that it takes time for your conscious brain to catch up…”Its here, its back.” You know that horrible Ray Rice elevator video all over the news? Imagine Ray Rice as the migraine. POW. Like that and you are down. And dragged out by your feet-limp and lifeless with a loss of dignity. Powerless against the force. Sound and light act like salt to the open wound. And these are the choices you are left with: which medicine should I take? Is it time to call my husband and get him to come home? Who will I call to help with the kids? Am I going to throw up? Do I go the ER or not? and always this one: When will the pain stop? (I have said that migraines are worse than child birth. Because with child birth you know the pain will end.)
They started in my late 20’s. I had been married 5 years and had my own prosperous business painting murals in and around Austin. A family history of migraine did not prepare me for the first experience though. I was driving to meet a client when I was hit with the pain. I had to turn the car around and get home quicky. My brother had suffered in childhood–his triggers being stress and chocolate. My mom had suffered as well-at the same age I was, except she had 2 little ones to take care of. Hers were hormonal, I had always known that, and when she had a hysterectomy her migraines stopped. That wasn’t why she had the surgery but it was a side effect that improved her quality of life.
My migraines, because every person’s migraines are as different and unique as they are, were manageable if I treated them early on. A shot of Immitrex in the leg at the very onset of pain could stop it. I carried that medicine with me everywhere I went. If I missed that window then I was up a creek–and the migraine would progress to the point of needing pain meds and bed to recover. But that was as severe as they got-I could still live & work, for the most part, normally.
At 27 I became pregnant with our first child and enjoyed a blissful 8.5 months with no migraine. I almost forgot the pain. Almost.
Diagnosed with preeclampsia at 37 weeks and puffed up like a marshmallow, I was told that the the only cure was delivery and “we are having a baby today.” I was sent straight to the hospital and not allowed to even walk to the restroom. A Pitosin drip was started right away. With dangerously high blood pressure I was told to lay quietly in the dark on my left side until it was time to deliver. After many long hours our perfectly healthy baby girl, Isabella, was born. But my blood pressure did not go down, and I had developed a migraine. It was a freight train of a migraine that could not be stopped and rammed right into (and destroyed) what was supposed to be a joyous time. Instead of nursing and cuddling my new baby girl I was told once again to lay on my left side in the dark. I plunged deep into depression, crying at the drop of a hat. A week later we were cautiously sent home and told to go to the drugstore twice a day to check my blood pressure because it STILL had not gone down. I was put on BP medication while the doctors scratched their heads & wondered what to do with me.
A mere 48 hours later I was back in the ER and explaining the whole ordeal to yet another doctor and hoping for something that would alleviate the pain. After IV drugs took the edge off the pain I was sent home again, but it wouldn’t last and everything the doctors tried failed. Five weeks after delivery I was admitted back into the hospital-this time for IV treatment of the migraine. Fear and depression were the migraine’s best friends and they grew exponentially side by side with the pain. Wondering if this would really work I remember climbing into the hospital bed, my body so sore, and skin sensitive to the touch, and my heart aching for my baby. I missed her as if she were a part of my body that had been hacked off and taken away. She was a part of me-my heart on the outside of my body and I wanted desperately to hold her and mother her.
The nurses began the IV DHE drip and each time they shot more of the medication into my IV, I wretched. The nausea was swift and severe. The anti-nausea medication they used caused an “allergic” reaction though. I kept feeling my eyes wanting to roll back into my head–I couldn’t control them. I started to feel my throat swell and my tongue felt weird–like it was getting pulled down the back of my throat, if you can imagine that. The doctor on call told my husband that I was just being a melodramatic woman. When it got really really bad, and the people that shared the room with me were alarmed by what was happening(they started asking “what is going on-can we help?”), somebody in charge finally realized the severity of the situation and I was given a massive dose of benedryl, and continued on the benedryl for several hours until the symptoms subsided. Eventually the DHE worked and the cycle of pain stopped. I still felt sore all over and drained of all energy, but I was pain free for the first time in weeks. I could see straight again.
I continued on blood pressure medication as a prophylactic measure. But each time my hormones changed my body rebelled and I experienced the sharp, throbbing pain again. If I caught them right away I could manage. A sense of normalcy slowly began to return and we were thankful for every pain free moment. My husband had to teach me how to change a diaper and take care of our daughter. I worried that not breast-feeding her combined with being separated would harm and interfere with our bonding. I felt tremendous guilt for being away from her. But my fears were unfounded and we bonded beautifully and powerfully. In fact my husband swears that during her first few weeks of life, every time I was in severe pain, she was inconsolable, cranky, and just a mess.
They say moving is right up there with death of a loved one & divorce as one of the most stress inducing experiences. So it comes as no surprise when I tell you that my migraines became more severe when we moved to the east coast 7 months later. A great job offer for my husband came and we needed it-between my health care & medication bills and the cost of having a little one-we needed the security of this new job. So we dug up our deep Texas roots and replanted them in Delaware-intent on making a fresh start.
But with no family and no friends around we were on our own to cope with migraine’s wrath. Before we left Austin my doctor had given me a large prescription of Stadol. It was potent (it had a street value and was highly addictive) and when I had to use it I couldn’t function or care for our daughter. Despite the migraines, we began to settle into life in Wilmington. We made friends, joined a church, I even taught classes at night and took on a few mural jobs part time. We developed a rhythm in our lives that, although rudely interrupted with migraine several times a month, was nurturing and secure.
I should tell you that I had long since abandoned drawing. Even before I became a mother, when I painted murals full time, I sketched only when it was required for a client. It had been years since I had drawn regularly and when I did try to draw I became frustrated with the results–what I sketched out looked nothing like what was in my imagination. But it was during this time that I realized I needed to record my tangle of thoughts and feelings that had developed as a result of living with migraine. I had ignored my art–I didn’t nourish it as it should have been–as a part of my soul. And in turn it could not nourish me. Still I pulled out the sketchbook and scratched out drawings of feelings-in bold, angry ink lines. How could I describe the pain? Words failed me, so instead I drew out the isolation, fear, and pain in stark,striking images that I shared with no one. The journal lay hidden in my pajama drawer-only pulled out occasionally in a fit of anger about my pain.
Three years after the birth of our daughter, I became pregnant with our second child, and again experienced 9 whole months migraine free. We were blessed with another girl, Eliza, who was healthy and perfect. This time delivery was fast & natural and I was up taking a shower 2 hours after she was born. The difference was like night and day and I enjoyed every minute of those early days. I cherish that time because I was able to nurse and to bond with her right away. Soon enough the migraines returned as my hormones began to get back to their normal cycle and my general overall health suffered. It seemed like I got every cold or stomach bug there was. At one low point I remember my husband taking me to the ER very early in the morning. As we made our way to downtown Wilmington I remember crying in the car and silently praying for the pain to end.
I was worried every single time I had a migraine that this would be “the big one” that landed me back in the hospital. Like people in California refer to the BIG ONE, I referred to my migraines. Was this one going to be IT? Or could it be stopped? Would I have to be admitted? If I was, who would watch the girls? How would my husband manage work? How much will this cost? “Will this nightmare ever end?” All of these questions plagued me on the car ride. I prayed for it to end. I prayed for it to be a brain tumor so they could cut it out of me. I prayed for it to be an inoperable brain tumor because honestly I just didn’t want to go on living like this. By the time we got there I was too weak to even walk to the back , and once I was checked in, a nurse brought a wheel chair out to me. With my pillow in hand I gingerly sat down, limp and weak. I craved recognition as a person, not just another sick patient. I wanted to connect with the people treating me. With a very thankful heart I asked her what her name was. She said “Hope” and I began to cry. God had heard my prayers and I felt as though He was telling me-do not lose hope, Heather.
During this time the company my husband worked for had been bought and people were either being laid off or relocated. But he was offered the opportunity of a lifetime: to complete his Phd, paid for by the company. What a blessing this was! He could go to school full time and draw 75% of his salary. But we had to move or we would lose the benefits of the relocation package. He began work on his Phd at the University of Pennsylvania and we once again uprooted our little family and planted ourselves in a new town, in a new state.
Weary and worn we began our new life in Yardley. Isabella was now 5 and starting kindergarten and Eliza was 16 months. A new town. No friends. Very little money. Add migraine into the mix and you’ve got a recipe for disaster. With that mixture comes a measure of low self worth, fear, hostility, regret, and debt. Now add in a medley of doctors and specialists and a laundry list of medications as long as my leg and you will get a clearer picture of what life was like during this time. The daily preventative medications I took were expensive and the side effects created a host of other issues. My hair fell out in wads in the shower. It grew brittle and felt like straw. Another medication, an anti-seizure drug for epilepsy, caused weight gain and sluggishness along with foggy thinking. The blood pressure medicine made me sleepy. I was not recognizable to myself.
The stress of taking care of the girls and not knowing when a migraine would attack left me in a panic. The fear of the pain had developed into full blown panic attacks. The slightest twinge in my head would cause my heart to race, my palms to get sweaty, a tightness in my chest, and the feeling of prickly ants all over my neck. The tears were just under the surface-like a water balloon-and the slightest prick would cause it to all come gushing out in a torrent. I tried to hold it together around the girls. I remember thinking about making the bed and then realizing what was the point? I would be crawling back in it soon enough. I couldn’t get through the day without laying in bed at some point. I was on antidepressants and anti-anxiety medications-and they helped-but they couldn’t take away the sadness and loneliness I felt. When a migraine hit I had to lock myself away in a dark room-alone again.
I could hear the girls-their laughter and their games, but I couldn’t be a part of it. Alone in my room my hands were often too shaky and my eyes too blurry from tears to be able to load the injectable drug I needed. I would call down the stairs-“can you come up and can you inject me?” Even now, telling you this, the tears are flowing. My heart still hurts and I still grieve. The images from this time in my life run like movie scenes in my mind. Me, being wheeled away from the girls on a gurney hooked up to the IV. My husband holding our youngest daughter in his arms, and she with her hands outstretched saying “Mommy.” I’ve never felt such intense loneliness or sorrow in my life. We were merely surviving. I had forgotten what it was to live or thrive. At a particularly low point I asked my husband just to leave me at the ER. I wanted him to take the girls home so they could have supper and go to bed in their beds–not sit in the ER waiting for me to get some relief. He had always been an advocate for me-talking with the doctors and nurses, bringing me warm blankets, and even holding my IV for me while I went to the bathroom. But I needed to know that they had some normalcy even if I didn’t. So he did as I asked and several hours later, in the dead of the night, the nurses called a cab to take me home. I returned home and quietly crawled into our bed, thankful for our marriage and the girls, but with a deep loneliness weighing heavy on my heart and on my spirit.
Looking for Answers.
We searched for answers. My husband and I read everything we could online in an attempt to educate ourselves about migraine, its causes, and its treatments. Who were the best doctors? What were the latest treatments? What did our insurance cover? What natural remedies existed? What about acupuncture? Should I change my diet? If so, how? What should I eliminate? What should I add? What supplements should I take? What could I do to make the situation better? All of these attempts, while whole-hearted, were just scratching the surface.
Our research led us to a headache clinic right here in Philadelphia called The Jefferson Headache Clinic. To be seen you had to pay several hundred dollars out of pocket first. Although the lump sum was a huge burden on our already tight budget we made it a priority and I was added to the wait list. A psychiatric evaluation would take place first and then you would be seen by a team of headache specialists. I felt hope again–this was going to be the answer we’ve been looking for! Not only was this NOT the answer-it was in fact a nightmare. The whole experience with Jefferson was horrific. The ‘lady’ who worked the phone and front desk was mean– really mean. She went out of her way to be unkind. Hard to believe, isn’t? (Since my time there I’ve met and talked with other patients who’ve all had the same exact horrible experience.)
The doctors treated me with new cocktails of drugs-mixing this with that. “Why not try this one?” “Here’s a brand new drug-lets give this a try.” I was a guinea pig. I had just paid a hefty sum to be treated like a worthless guinea pig. They even tried injecting my head. I was given injections of lidocaine and then shots of steroids in an attempt to stop the cycle. Numerous injections in my head. Had to just say that again. When it didn’t work I was forced to go back to the DHE infusion. This time though, instead of admittance to the hospital I was taken to the infusion lab where cancer patients receive chemo. The migraine sufferers were all together in a separate, darkened room. We were each hooked up to IV’s and given combinations of drugs to stop the cycle. One of my first trips to the infusion lab I was given some medication (not sure which one it was) that drugged me up so much that I got up out of my reclining chair and, in my sock feet rolling my IV bag with me, I began to roam the halls of the hospital. They used the cameras in the halls to find me. I have absolutely no memory of this at all. I am just relaying the story as it was told to me. I just remember waking up and my husband helping me get my shoes on to leave.
The turning point.
That summer my father was diagnosed with prostate cancer. I needed to go home. I needed my mom and I needed to be there for my parents. Many, many times my mom had flown up to take care of me & the girls when I could do neither. She made meals, took the girls to school, and spent time with my husband–offering much needed emotional support. When she wasn’t with us she was home in Texas, praying for an answer. I decided the girls and I would go down to Texas for 6 weeks. Akin had so much work to do and he could go about it without worrying he needed to come home and take me to the ER. I could be an emotional support to my mom and dad and the girls would really lift their spirits. That was the plan at least.
How does the saying go? God laughs when we make plans. I don’t think He laughs, I think He sighs a heaving, exasperated sigh. If we are heartbroken He feels that sadness too. And I was heartbroken and home sick. I hadn’t been home long before a migraine struck with such strength and power and veracity as I had not known in years. My mom, already caring for my dad, now had to care for me. She drove me to the ER and I was treated and sent home. I crawled into bed in the guest room and lay there perfectly still, angry and upset. If I moved it hurt. If I blinked it hurt. If I saw so much as a tiny ray of light it caused shooting pain into my head like daggers. Sound made the throbbing in my head pound louder and louder–like I could hear the blood pumping through my veins. Through the night I continued like this and the pain grew and worsened. Early the next morning we headed back to the ER.
They gave me morphine this time, and still it did nothing. I lay motionless in a ball in the bed. The sounds of the ER rubbing me like sandpaper over raw skin. Finally they admitted me and I was moved to a room to start the DHE drip again. This was the only thing that ever stopped the cycle when it got this out of control. My girls were doled out to a dear high school friend and my mom stayed at the hospital with me, instead of being at home with my dad-who also needed her in his recovery from surgery. My husband, feeling helpless in Pennsylvania, waited for updates from my mom. The DHE did its work–and despite the wretching and nausea–the migraine diminished. A very kind neurologist came to see me before I was released. He sat down next to the bed and said these words to me: ” You are too sick to be this far away from your own doctors.” I thought to myself “That’s it, I’m not doing this again. This has to stop. I am too young for this. I can’t live like this another day.”
The beginning of the new beginning.
When I returned home my husband and I drew up detailed charts for me to fill in with all sorts of detailed information daily. We were going to keep a log of my health, day to day, and see if a pattern emerged. We were going to get to the bottom of it. How much sleep had I had? What did I eat? What was my activity level? What was my pain level? What medications had I taken? Did I have my period? Was I ovulating? EVERYTHING went on these charts. I filled them in religiously.
Over the course of then next 8-12 weeks a pattern began to emerge. I could see that the migraines, which were chronic (meaning more than x number per month) were hormonally driven. It didn’t seem like it was the actual hormones that caused them, it seemed it was the change in hormones. Every time my hormones fluctuated the migraine started. So I could be on my period, ending my period, ovulating, or stopping ovulating and I would get a migraine. I found a new neurologist and I shared these notes with him. He agreed –a hysterectomy looked like it could work. At last! Many women cease to have migraines when they go through menopause, but then again many women have them much worse. It was a gamble. But I wondered how could it be worse? And I knew it had worked for my mom.
I took the charts to my OBGYN, along with the notes from the neurologist and we all decided that it was worth the risk. But they had to do some experimenting first. I was put on birth control pills that prevent you from having a period. While in theory this seems like it would work, it didn’t and my neurologist pulled back his recommendation. He even insinuated that I was drug seeking. (This happens to a lot of migraine sufferers. They are blamed for their pain. Not only are you suffering but guess what? Its your own fault. You’ve taken too much pain medicine–you are having rebound headaches. Its a cycle of pain–and its damn near impossible to break. There’s a stigma that comes along with it as well. That you are a little crazy & unstable.) I was furious!
Because of my neurologist back stepping, my OBGYN back stepped too. It was just too risky to perform a full hysterectomy on an otherwise “healthy” young woman.The surgery had been scheduled and then-just like that the hope of recovery was yanked from underneath me as the surgery was cancelled literally the day before. I cried bitter tears, I yelled at no one. I just yelled and cried in anguish until I just couldn’t cry any more. I was practically begging for the surgery. I instinctively knew it would help, as it had helped my mom 25 years earlier. So, after meeting with his team of fellow OBGYN’s, my doctor agreed to try me on Lupron for 3 months. This would induce a sort of ‘medicinal menopause’. And sure enough, over the course of the next 3 months it worked. I still had some headaches but they were easily treated with Tylenol. Tylenol! To think of that! I used to say that taking Tylenol when you have a migraine was like taking m&m’s–it wasn’t going to do a thing. But here it was working! The hysterectomy was back on!
I had a full hysterectomy in May of 2006. When I woke up from surgery I had a bad headache. But the pain medicine helped and within 48 hours the headache was gone. I began using hormone replacement patches and have been migraine free for the past 7 years. I still have some auras. Little white lights that dance around in the periphery of my vision. I still get a feeling of panic when I see them but now I know I won’t be knocked out with pain and the panic subsides. I get headaches, and a couple of times they’ve been powerful enough to make me wonder-are they returning? I still fear their return and I always will. I also fear my girls having to experience what I went through. I pray that they will not. I also pray that if they do, that I will be able to advocate for them and that there is better understanding of migraine cause and treatments. I truly hope that by sharing my experience it will somehow benefit others.
About a year after my surgery I took my scratchy, angry journal drawings and I started painting them. In the process of healing I was able to express some of the pain and isolation I experienced, and when I began to share those paintings online I was able to connect with other sufferers as well. This was incredibly rewarding and humbling. (See my work on the cover of Migraine Expressions.)
I am so thankful for pain free days, for learning to live and thrive, and for being able to create the life I want. Had I not had those experiences I wouldn’t be the person I am today, and that goes for my husband and the girls too. That makes me incredibly thankful. Because you can either go through hell and be angry about it, or you can be thankful you are on the other side.
I choose gratitude. I’m a different person now. I have a deep abiding faith that permeates everything in my life. Our family is very close. Our marriage is strong and passionate. And I look back on those experiences and remember that “I am not what has happened to me. I am what I choose to become” -Carl Jung